Migraine

Thank you. I wish we did live nearby.

How exciting to have lived in France. Andrew would like to go there someday.

quote:

Originally posted by MaxJerz:
Jean Ann, I don't have much in the way of advice, but I wanted to add to Droolie's offer of help. If I was in your neck of the woods I'd be more than happy to tutor Andrew in French. I lived in Paris for a semester and am fluent (minus what the Topamax has been robbing from me). Wish I was closer and could help you.

I'm thinking of you both and sending you lots of good thoughts. I know others here will have good feedback for you.

Hi JeanAnn,

I've been trying to catch up and so glad to hear you've come to a resolution. It really sounds like the best options for everyone. Sports, music, and art are all important part of our children's education. No child should go without if that is what they want to do, period. Don't even get me going on that one !

My for you all. I know you'll keep us posted.

hi JeanAnn, gosh i'm sorry to hear andrew's not been doing well and that you guys are having such a hard time. i'm glad that some progress on the educational front has been made.
a lot of times the teachers and administrators don't realize that in addition to the pain your child feels he is under a lot of stress and is constantly playing catch up. unfortunately the world doesn't stop and wait. this only adds to the whole cycle. chloe's migraines were always worse in the mornings and sometimes i'd be able to get her to school in the afternoon...her teachers would ask if i could bring her in the morning some days as she was missing certain subjects...if only i could plan her migraines around the school schedule! well you know my frustration and disdain for how the schools treat this issue...

thankfully chloe's migraines have been fewer and far between. i so hope that andrew is feeling better and on the road to feeling GOOD!

Hi

I'm so glad to hear that Chloe continues to do well. That's great! It gives me hope when I hear that the other kids are doing well.

I don't feel that the school was following the 504 plan for the most part. Some things never got done. When he was feeling well, we didn't need those things.

I got a progress report on Andrew dated March 6. It showed 6-100s, a 95, 87 and a 62. That was one week ago. This week he is failing 5 courses. The 62 is in science. He did poorly on the one test in there. The teacher is giving him only 50% or 25% for late homework. The problem was that the progress report was not current.

I know I have said this already, but I need to say it again. I'm so MAD at the school. They do have some responsibility here.

I hope to go into the principal on Monday. A close friend of mine is going to accompany me. (I need the moral support.) I'm going to ask if they will give him back the homework points instead of penalizing him for being sick especially since they were not following the plan that we had in place. I'm going to ask them to help me keep him on track when he leaves school. It's going to require a little extra effort from them. The marking period ends in about 4 weeks.

As much as I have been having doubts about cyber school, I really think we have to do it even if he doesn't get every single credit he needs. (They don't offer the same electives that he is in.) I'm just trying to make sure I think of everything. I don't want any surprises later.

I don't know if the new medication he is going to start, depakote, will work or not. How long before it starts to work? What about side effects? I just can't be sure when he will be better.

Andrew has been working hard to catch up. He worked Friday night with a friend. He is now caught up in math. He worked hard for several hours yesterday. He is making progress.

Jean Ann

I'm proud of Andrew! I know how often I, an adult, feel like throwing in the towel. How a younger person would deal with school with migraines nipping at their temples all the time is hard for me to imagine. But he's working hard, and trying to catch up. Good for him!

Hi Jean Ann, I sent you an e-mail this morning.

I am glad to hear that Chloe is doing well.

Jean Ann,
isn't part of andrew's 504 that he NOT be penalized for late assignments? it seems that the school is not really following the 504 or that some changes need to be made. i'm glad you are bringing a friend, you need someone on your side and another set of ears is always beneficial. i always get too emotional when dealing with the school, which never works in my favor but i can't help it. they just don't get how completely overwhelming it is for a child (and family) when you're always trying to play "catch up"...... some empathy and compassion would be nice. chloe is home today, but it's been 2 weeks since her last migraine so i have to be thankful for that!

i hope you find some relief soon!

Hi

I have some new updated information from my ongoing school saga. Ughh... How frustrating it all is.

I met with the principal and guidance counselor last night. They are both very nice and compassionate. We talked about dropping a class. They agreed that they would do that.

I was able to keep my emotions in check until the very end. That was better than I had hoped for. I've been an emotional wreck lately.

We talked about the late assignments. The principal went to the teachers today. Two of them are insisting on keeping the half points for homework. The problem is that he is going to have to work harder to get those points back when he is still very ill a lot of the time.

I have decided to fight them. I asked that my 504 plan be updated retroactively. (This was advice from my advocate.) They don't seem to want to update it, but if those grades don't change to full credit by the end of next week I will be calling for my 504 meeting. I already requested a 504 meeting last week. That isn't optional for them. If I ask for one, they have to give me one. (I plan to update it anyhow. I want to handle my current problems first and then I will work on that more.)

I got some great ideas for my 504 plan from my advocate. She actually sent me a sample for another disease, but the ideas are the same.

My current plan only allows for 24 hours to make up work. That's normally fine, but when he gets into a sick cycle how can he do that. He's been going through a lot more than migraines lately with all the side effects of the meds including stomach pain.

I asked them to give him full credit no matter how late the work has been. They don't want to. I'm not afraid to fight the school to make them do what they should do.

We didn't know he was behind because they didn't have their grades updated. He knew he was behind, but he has not been himself on this medication. Just like Julie said it's a vicious cycle. You're right some empathy and compassion would be nice. All the teachers aren't being difficult either. I don't want to give them all a bad name.

The 504 says that a note taker (person to gather homework) will be provided. They think we should have found someone. I think the 504 lists the accomodations they have to make. I think they had to get the note taker. If they had kept up on their accomodations maybe we wouldn't be in this situation?

It may be a long road ahead, but I now have my advocate/attorney. She will write them a letter as soon as I need her to. That might be all it takes if I can't work it out myself. She prefers coaching people and trying to let them handle it, but she will step in as needed.

I do have a note for homebound instruction. Andrew and I will be discussing the pros and cons of that over Easter break. The advocate said "it's the school's job to educate him. Make them do their job." Instead of pulling him out right away on homebound. But if school continues to be a stressor than we leave.

I'm so worried about Andrew. The migraines are bad enough, but the stress from school is awful. I worry that he will get depressed over his situation.

We see our doctor on Friday. I'm looking forward to it.
Jean Ann

Jean Ann, I'm glad you seem to have found a good advocate. Your son is lucky to have you.

What a difference a day makes! Good for you and Andrew, JeanAnn.

You are so right, it IS the schools job to educate your son....now they better get on the stick and DO IT

You go, Jean Ann!

I've got a good, strong feeling that with the advocate on your side, things are going to start falling into place. It's past time for those holdout teachers to do their job and follow the accommodations afforded by the 504. Good for you for knowing your rights in the process to call a meeting and refusing to back down!

Good for you Jean Ann!! Way to hold your position. I am so glad that you have a good advocate for Andrew. The public schools dont like to back down an inch until you hold your ground. As soon as theres a good solid stand, they finally listen.
Absolutly rediculous it has to go to that length with some teachers! Im proud of both you and Andrew. Keep up the hard work!

My lil guy is only elementary grade. I can imagine its much harder and more red tape with a highschooler!(ya I have a son in hs also, but no health issues with him) Guess I have that to look forward to in the upcoming years. Its been enough struggle with the schools now.


Tawsha

Jean Ann,
You are great. And your son is lucky. All of this must just be so much for you sometimes, but you've done such an amazing job for your son.

In reading these posts from you what really gets me are the teachers who don't want to help. It just amazes me. He's sick, he's trying and they don't want to budge. It is just beyond me.

Again, thank you for sharing so much. What you have shared and posted will help someone else with the information or the encouragement to go keep going on for their child.

Take care,
Cindy

Hi Jean Ann,
I was silly and didn't realize that more pages existed and that i needed to go to Pages 2 and 3. So much i missed! Anyway, we are going through some similar things right now. Breezy is a ninth grader and i desperately want her to remain at school. It is so so tempting to say the heck with it and have her stay home, though. Breezy is on month 18 of her never ending transformed migraine. She is ending cymbalta and depekote and starting lyrica (neurontin family). Kind of the opposite of you guys. As i mentioned on the previous message, Breezy's new doctor really wants her in school every day (Breezy and i have agreed to "most") even if she can only physically be there and not be taking notes or participating. SHe wrote a letter to the school asking them to assist with
* staying a full day in school as "by engaging in her regular activities, she is teaching her body to function despite the pain, andalthough this will be quite difficult at first, it will become easier over time."
* giving her 15-20 minute breaks at the nurse as needed
* a plan to complete make-up work she is overwhelmed with. Modifications to the amount and a timeline for assignments
* copy of class notes.
* not being immediately responsible for material in class, as some days she isn't well enough to take notes.
I followed the note up with a meeting with the school teachers. OK, i, too got somewhat of a hard time. Grrr. Her 4 main teachers came, along with the guidance councilor, the submaster and the head of guidance. I think the head of guidance came to protect the teachers so i wouldn't ask for too much. When i tried to discuss the overhead projector and reading being difficult for her, the head of guidance said, " This is not a parent wish list." He didn't want to discuss anything the md hadn't written down. Ooooh! Wrong thing to say to her special needs teacher MoM! I then informed him that if it were a wish list I would surely be wishing for my daughter's chronic pain to go away. What an insult. Were we there to help my daughter or keep the teachers from doing a little extra work to help a student with a medical disability? We did accomplish a few things. The class notes will be provided by setting up a buddy in each class. Breezy will take the notebook to copy at the end of each class and someone else will return the notebook to the buddy so Brienna isn't late for the next class (we'll see how it works). Work will be modified (cut back) and timelines will be provided-giving plenty of extra time.
So... anyway, i do get a little distracted...
if ANdrew should end up at the big, bad school,
consider...
* 2 weeks to make up any work from the date he receives the assignment
* the teachers should leave a folder for him with all assignments, handouts. It is too hard for our kids to come to school not feeling well, function, try to catch up, and get the notes/assignments from previous days. Breezy was getting quite overwhelmed and would often take makeup tests without all the needed notes.
* Breezy did bring home tests and quizes to make up and now uses her 6th period study to make up a lot.
Breezy did access a tutor from the school over last summer to make up all her 8th grade work so she could get grades. I so want her to remain in school with her friends so she can maintain some semblance of a real life. I fully understand your position on stress over the school experience, though. YOu and Andrew certainly have a difficult decision. As a widowed mom, my options are somewhat limited as i do not want Breezy home alone every day. She too plays a school sport this spring, which i hope will help motivate her to attend school regularly.
As one final note, i do know that individual teachers have been successfully sued for refusing to follow through with providing class notes when it has been included on a 504.
Cindy G.

Hi

We are in Baltimore today and have an appointment with our doctor tomorrow. I can't wait to see him.

I am having problems with 2 teachers. They believe they did give him the extra 24 hours required by the 504 plan. Honestly, I don't have the records to figure all of that out. However, I do know that my son has been very sick since the end of January. As if the migraines weren't bad enough he has been experiencing awful side effects from his medication both physical and mental.

I spoke with the principal yesterday. I told him I feel like those 2 teachers are punishing him for being sick. This isn't normal behavior for him. If he wasn't sick, he wouldn't have been behind. He said they are trying to teach him responsibility. I think they should show him some compassion. I will ask again at my 504 meeting for some mercy.

I had asked one of these teachers to stop discussing the back work with Andrew. It was just causing more and more stress. We needed a few weeknights and the weekend to get everything done for her. I don't know if she is mad about that or if she is just plain mean.

He did get way behind. He never said a word to anyone about it. It just isn't like him. He has worked hard while still sick to catch up, but they don't see it that way. I told the principal go back through all of his past years. He has NEVER done this before.

I again requested a 504 plan meeting. My ex and I will be meeting with the school on Tuesday for that. I will have to work on my list of accomodations again to make sure I ask for every single thing.

Cindy G. Thank you for all of your information. Sounds like you are doing a great job for Breezy. I have the same concerns for Andrew too. I really want him to have a normal life at school like everyone else. I work at home often and my ex is at home too. We would be able to keep an eye on him if he stays home. But, homebound requires so much work from the kids on their own. I don't know. We are trying to hang in there for as long as we can. I am going to use your suggestions for my plan too.

The school wanted Andrew to run around after school and get all of that back work. I insisted that they do it. They agreed, but I need it in my 504 plan. They seemed very reluctant to update that plan.

The principal is trying to understand the illness, but he just can't. He said "I'm sure you will get some answers from your dr. this week." I wish it were that simple. You all know how the process works. The dr. tries the next drug. We have to wait and see etc... It's frustrating trying to explain it.

Thanks everyone for your continued support. It really means a lot to me.

Jean Ann